Empower Yourself During Your Cancer Journey

Okay, so you’re sitting in your doctor’s office, or an endoscopy suite or a clinic. You just heard the phrase “cholangiocarcinoma” followed by “cancer” or some variation on this theme. I can guarantee you that everything in your life that happens after this will be colored by this single experience. You will never forget this day, this moment, those words.

While you, or a loved one or friend may be feeling overwhelmed right about now, you will get through this. It won’t be easy, but you have to believe you will get through this and be steeled up for a fight. One of the ways to feel like you have control in what otherwise might be an uncontrollable situation is to decide that you arein charge of this battle. You will work with your doctors to determine the best course of therapy after discussing all options available. You will decide that you are not going to let this cancer define you; You are not a cancer victim but a person who happens to have cancer. Give yourself some time to grieve and to lose it – I did, I think everyone I’ve ever talked to who has fought a cancer battle has – but then you have to get psyched up for a fight and have the strength of will to give it everything you’ve got.

Lean on your friends, your family, your faith – whatever it takes. If you have acquaintances who act like “downers” and want to start planning your funeral services, tell them so long for now and focus on those around you who are going to stand by your side during this battle. Let those close to you know that you need their support and encouragement, because on more than one occasion during this battle – either during chemotherapy, surgery, follow up screening or radiation treatment – you will need tremendous support and encouragement.

It is natural to get worn down from the process. I know, I’ve been there and no doubt there will be times when I’ll be there again. In fact one thing that I have found helpful is to allow myself one day a month to just lose it. Once I gave myself permission to do this, I found myself not needing that one day but every two months or so. I can’t remember the last one of these days I had.

The other thing that you can do as a patient or caregiver is to educateyourself about your cancer and your treatment. I can’t stress this enough. Now I know anyone (myself included) who has a background in the health care field is at a bit of an advantage because of a familiarity with terminology and processes. But thanks to the plethora of resources available on the internet and even at your local library, anyone can learn about their cancer and treatment options. Education is key to understanding your disease and partnering with your medical team in battling your disease.

There is so much information out there it can be overwhelming but you have to stick with it and discern what is crap and what is fact, what applies to you and your particular diagnosis and what doesn’t. Never before have so many resources been available to patients battling this cancer. And like with many other cancers, treatments and surgical options are evolving constantly, so often what is first to show up in an internet search engine is already dated and may not apply. It takes some digging to find what is cutting edge, what was recently presented at ASCO and what was recently published that shows success in treating CCA.

Keep fighting and share your success stories with others through the comments section!

“Reports of my death have been greatly exaggerated” –paraphrased from Mark Twain

What a neat idea. Mark your blog is great. The advice you give can be used in other areas not just cancer. It can be applied to stress, mental illness, chronic illness and many other areas. I agree that you are in charge. Not giving your power away is so important. We are not our disease. So many people’s identity become their disease. You don’t thats how strong you are. It is just like you to reach out to others with this blog. You are the best Mark.
Hug’s, Valerie

This blog was a great idea. It provides a vehicle for you to document your experiences fighting this cancer and also gives you an opportunity to share what you’ve been through with others dealing with this disease. You’ve done a great job describing your feelings, symptoms and treatments in a concise and clear manner so even those people without a medical background can easily understand it.

Everyone in our family is so proud of you and how you’re confronting this disease. With your great attitude, and all the love and support you have from God, family and friends, I know you will beat this disease.

MARK – It’s just like you to find the positive side and inspiration in everything life brings. I agree with Valerie that your suggestions are a great idea for everyone. I’m learning not to wait until I do have a disease before I decide to take life by the horns and live it fully. You are very inspirational and I know this blog will be helpful to a lot of people. Love it – and love you and Debra.

Mark
I have found your website very inspirational and very helpful. I just found out that my mom has cholangiocarcinoma. They did a laparoscopy on tues to find that it has metastisized to her diaphram and peritoneum cavity(abdominal). Her liver and bile ducts were first infected and the first diagnosis was to shrink liver and then remove the other tumors in her bile duct. But after finding the cancer had metastisized to other areas we are waiting to speak with an oncologist on tuesday to determine the next form of treatment. She has not had an appetite and is only drinking protein shakes and broth, I read in your articles that keeping your protein intake up (especially in chemo) is critical to beat this. Loss of lean body mass can lead to inability to heal, decrease strength and weeken immune system. But, when she can’t eat much I don’t know what to do, and we haven’t even started chemo yet. It is possible her stent may be blocked again (they put one in when they did the ERCP a week ago) so her bile can drain(she had very high levels of bilirubin). I am just speculating at this point, but since her cancer is not resectable, they have to just start chemo, right? What were your symptoms? I might visit you again when I find out more from the oncologist on Tues. Thank you so much for starting this site….it could save my mom’s life. I wish you many many well wishes and hope for you to beat this cancer soon. You have that winning can do attitude that will help you beat this!

Important Disclaimer

This Blog is generated by a current cholangiocarcinoma patient and is intended as a resource for other cholangiocarcinoma patients, their families and caregivers.
Please note: I am not a healthcare provider. Nothing on this Blog qualifies as certified medical advice. Information on this Blog including links to other sites is provided free and is for informational purposes only. Any opinion stated on this Blog is solely that of the author and does not represent the opinion of WorldPress.com or any other institution referred to in the Blog.